Field of genes: the politics of science and identity in the Estonian genome project

Fletcher, Amy L.

doi:10.1080/1463677042000189589

Cited by 22 publications

(14 citation statements)

References 9 publications

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“…Sociologists have recognised that biobanks are political entities, created and maintained through numerous acts of policy‐making and persuasion (Fletcher 2004). Much of the sociological literature has, therefore, focused on organisational and governmental motivations for establishing biobanks and the complex relationships between government, academic and commercial organisations, while critiques of the social organisation of biobanks have tended to focus on the problems associated with the late‐capitalist commodification or ‘marketisation’ of the human body and the formation of tissue‐based economies, including potential effects on the sanctity of the body, human psychological development, dignity, wellbeing, agency and kinship.…”

Section: Introductionmentioning

confidence: 99%

Tissue donation to biobanks: a review of sociological studies

Lipworth

Forsyth

Kerridge

2011

Sociology Health & Illness

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Collections of human tissue (biobanks) are thought to be an essential resource for biomedical research. Biobanks have, however, been a source of debate in both bioethics and sociology. In recent years this theorising has been supplemented with empirical research, including a significant body of qualitative research, into donors' experiences and attitudes. To date, this literature has not been synthesised. We report the findings of a review of qualitative literature regarding the ways in which lay people construct and experience the process of donation to biobanks. Our aim was to determine what the qualitative research literature tells us about the process of donating to biobanks, and how this can enrich existing insights from quantitative research and from theoretical sociology and bioethics. Qualitative research shows that donation to biobanks is a complex process shaped by donors' embeddedness in a number of social contexts; by complex relations of trust in biomedicine; and by the ambiguous status of human tissue. While these findings are theoretically and practically useful, current sociological theorising is very general. A more detailed and nuanced 'sociology of biobanking' is needed, and this might be best achieved by exploring specific theoretical questions in a variety of biobanking settings.

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Section: Introductionmentioning

confidence: 99%

Tissue donation to biobanks: a review of sociological studies

Lipworth

Forsyth

Kerridge

2011

Sociology Health & Illness

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“…12 10 A good summary of the respective accusations was given by Eesti Ekspress (2004a). 11 The heterogeneity of the Estonian population (the result of various occupations over the last few hundred years) was believed to provide a rather good basis for commercialization (Fletcher 2004). However, Spielman et al (2007) show that more than 25% of the genes tested in an initial survey differ significantly between populations.…”

Section: The Conflicting Objectivesmentioning

confidence: 98%

The Rise and Fall of the Estonian Genome Project

Kattel¹,

Suurna²

2008

Studies in Ethics, Law, and Technology

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This paper presents the case study of the Estonian Genome Project (EGP) during its initial phase from 2001 to 2007. In these years, the EGP was an independent foundation established by the Estonian government and almost fully financed by foreign and local private venture capital. In essence, it was a public-private partnership in science, research and development. At the end of 2004, this governance structure broke down and private funding was pulled from the project. The paper discusses what went wrong with the EGP and what the main policy lessons are, namely that particularly developing and transition countries like Estonia with low administrative and policy implementation capacity should approach public-private partnerships in high-tech research and development with high caution as conflicts of interests and loss of accountability seem likely; this is particularly the case in biotechnology because of the high scientific and business uncertainty characteristic of the field.

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“…Such countries include Iceland, Estonia and Finland, where it has become increasingly important to mobilise and re-use existing resources in an effort to bolster local research sectors, specifically biomedicine (Fletcher, 2004). Within this context, national collections play an important role in facilitating such goals.…”

Section: Waste Discourse In Finlandmentioning

confidence: 99%

From gift to waste: changing policies in biobanking practices

Tupasela

2011

Sci. and Pub. Pol.

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Traditionally the analysis of biomedical discourses surrounding biobanking has focused on the role of donation and gift giving as central aspects related to the procurement and use of tissue samples. More recently, studies have looked at the political underpinnings of building national collections of tissue samples. These national projects draw increasingly on a discourse of waste and efficiency as a way of legitimising activities. This paper draws attention to the way new arguments draw from environmental discourses in an attempt to reframe contentious ethical and legal issues in a more favourable light. Attempts to evoke notions of efficiency draw on a different set of persuasive techniques to foster support for large research and development ventures involving public-private partnerships, but at the same time limit public debate.

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Field of genes: the politics of science and identity in the Estonian genome project

Cited by 22 publications

References 9 publications

Tissue donation to biobanks: a review of sociological studies

Tissue donation to biobanks: a review of sociological studies

The Rise and Fall of the Estonian Genome Project

From gift to waste: changing policies in biobanking practices

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